Health Story Hub
Daughter describes the stress of caring for her aging parent from geographically distant place. Details many issues that created burnout in her caregiver role, including feeling isolated and embarrassed about her struggle until she found out all of the problems she faced were very common for caregivers in her position. Useful to discuss how difficult it is to care for elderly parents, especially from a distance, and caregiver burnout.
Michelle Friedman describes providing home care for her estranged younger brother as he dies from advanced pancreatic cancer. She touches on difficult topics of conversation, her brother’s depression, and grappling with death and religion.
An English language translation of this essay is available under the title, “A last act of intimate kindness.”
Spitzer describes caring at a distance for her mother and father with COVID. Her mother dies, and Spitzer (a literary scholar) explains how Virginia Woolf’s To the Lighthouse (a book that helped Woolfe come to grips with her own mother’s death) takes on new meaning as Spitzer grieves her mother. She explains, “Reading and interpretation are how I deal with overbearing emotion, and they are also the way I am working through this grief and making it mine.” She asks, “How to square the collective grief of COVID with the solitary grief of a mother’s death and a father’s illness?” and here, too, she finds insight in Woolfe’s work, Mrs. Dalloway. The essay’s concluding section describes interactions in her neighborhood and the process of grieving during social isolation.
The essay could be used to discuss different ways of dealing with grief, and some of the common and distinctive features of COVID-related grief. It also points out the value of literature and personal stories in grieving processes.
This poem by Wald is composed of 55 words describing his experience as a spouse caregiver to a patient with brain cancer. The adjectives were similar to those Wald heard being used to describe the experience of COVID. In a brief afterward, he explains his intention for the poem: “I hope that this story might help readers pause, reflect, remember, and respond to suffering, both covid and ‘uncovid,’ with compassion
for others and for oneself.”
This short poem and the author’s reflection could be useful prompts for a discussion of how COVID experiences are similar to or different from other more “ordinary” or familiar experiences. There is also room here to discuss the ambiguity in poetry and the way it can allow both for multiple individual interpretations and empathy/common ground.
Miriam Wallace, Professor of English & Gender Studies at New College of Florida, recommended this book on the Health Hum listserv. Author Alexis Orgera is a poet and the daughter of someone with early onset Alzheimer’s. Said Wallace, “What’s particularly lovely is the way it blends caregiving with learning about the disease–some great accounts of time she spent drawing with her father as a way to keep him connected as the disease progressed.”
This graphic medicine opinion piece by a professor of medicine and palliative care complicates the belief that a death at home is less expensive or more satisfying than death in a hospital. The author recounts conversations he has had with home caregivers about the burdens of complicated care regimes; the physical, psychological, and economic costs, and the systemic incentives to shift care to home caregivers who may be ill-equipped.
This short piece is useful for discussions about end of life care, both the personal burden for caregivers as well as the systemic and economic incentives. It includes brief quotations from caregivers the author has worked with as well as statistics about end of life care in the US.